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A Matter of Life-and-Death: The Ethics of End-of-Life Care

GeriPal recently conducted a poll to ask readers if they would take a pill to add 500 years to their lives. The question of quality versus quantity was raised – would extending one’s longevity with a compromise to quality of life be worth it?

I recently came across an article that addressed this issue on both sides. In Ontario, Canada, the provincial Consent and Capacity Board is reviewing a dispute over Desmond Watson's life. The 87-year-old suffers from advanced dementia and was admitted to the hospital 14-months ago with pneumonia.

According to the doctors, treatment should cease because “Desmond is suffering without any prospect of long-term improvement.”

According to the wife, “People look at him as a vegetable. But he isn’t. He’s a person with dignity. Don’t take that away from him.”

Who is “right” and what will be the outcome of this ethical conflict? This is an end-of-life question that Canada has not yet established "clear provincial, federal or medical protocols" to enable doctors and the family to answer, begging the questions:

When it comes to end-of-life care, do the values and beliefs of the patient and his family trump the obligation of the doctor – whether professional or moral or both – to end suffering?

What end-of-life protocol(s) could Canada implement to facilitate the resolution of this conflict?

Desmond Watson's pneumonia cleared and he is breathing independent of a ventilator - does/should this have any bearing on how the dispute should be resolved?

Please share your thoughts in the comments section.

by: Julie N. Thai

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What dignity in being unaware and uninvolved in your surroundings? Of being incontinent, and and cleaned of urine and feces by others? Of being bathed or showered by others? What dignity in your muscles contracting, your body no longer in your control?

As a Director of Nursing in a Skilled Nursing Facility in the US, I hope that I die prior to having dementia, and have made my wishes very clear to my family on the subject. I have no wish to go through the indignities of those with dementia, even though I protect the rights of those who wish to do so. No 500 year pill for me, thanks!

"Dignity" is a difficult term that has perhaps too great a burden to bear for one word. It is 'loaded,' but it has also been called devoid of meaning. I see at least 3 ways to consider what it signifies. "Me" points to one, common enough: "what dignity in being unaware ... incontinent," totally dependent. But the other ways of looking at this are much more affirmative of life. For one, 'dignity' may be conferred by others on the most decrepit of person. Can there be 'dignity' in totally caring for another? Absolutely, for both parties. Further, some believe that human life, in and of itself, has 'dignity' because such has been conferred on us by (the Christian) God; the (non-)quality of that life has nothing to do with this. Further still, some would extend this dignity to all (human or not) living beings.

Regarding the initial question posed by Julie Thai, when it comes to end-of-life care, I believe the values of the patient and family will, and should, usually trump those of the healthcare 'professional' -until/unless we have a system that explicitly requires rationing. Canada is way closer to this than we are here in the US. The one exception I would make to this is if "Desmond" were really suffering, say pain, and the family was refusing to allow medication which could successfully treat the problem. But, that doesn't seem to be what's happening in this case...

Its an interesting debate and Canada is far more advanced in their End Of Life practices than the United States. Dignity is a personal issue as is Quality of Life, that's why they have advanced directives. Sadly,the bottom line is no country could afford to keep everyone on Life Support that wanted it.

The case he case was recently sent to the Consent and Capacity board where Maria stated her wish for Desmond to continue receiving medical treatment based on his previously expressed beliefs. The Toronto Star reported that the Consent and Capacity board "ordered doctors at Oakville Trafalgar Memorial Hospital to act against their own wishes and provide him with aggressive, life-saving treatment if his health falls into crisis."

I take issue with the wording here - "the obligation of the doctor – whether professional or moral or both – to end suffering" - because many of these questions come down to words and how they are interpreted. In no instance do we (and I use the pronoun loosely - I'm not a physician) have an obligation to end suffering. We most certainly have a moral, ethical and professional obligation to ease suffering in accordance with the goals and preferences of the patient and family and within the limitations of the medications, etc. at our disposal.

It could be argued that some clinicians do feel an obligation to end suffering - by completely eliminating symptoms, for example - but the phrase "end suffering" easily lends itself to arguments about euthanasia and physician-assisted suicide. I'm not sure that's the conversation we're having here. Or is it?

What's interesting in this case is that it seems clear that if Mr. Watson's wife had allowed the patient to be transferred to a LTC facility, the question of continuing "life-saving" treatment might never have come up. Many vented patients are housed in sub-acute facilities for years on end and the ethics of such care are seldom questioned. The dispute about withdrawing ventilator support is now moot but it doesn't mean that the issue is resolved. When Mr. Watson is transferred to a SNF and develops aspiration pneumonia - both are almost inevitable - will he be treated with IV antibiotics or not? How will other complications be dealt with?

The other salient point here is that neither the physician nor the nurse who brought this case to the attention of the ombudsperson were able to say that they knew what Mr. Watson's wishes were. We need to be able to say that we've had that conversation with our patients because the goals of the patient and family are the essence of palliative care - any appeal to ethics or morality lacking that foundation is bound to fail.

Eliciting values and beliefs is a fundamental part of determining interests. The fact that such a discussion had not taken place (by everyone's admission) suggests that there were some important steps missed here in the communication/conflict negotiation process.Now that the patient is off the ventilator, there is an opportunity to refocus the discussion on a deeper understanding of the patient's values and goals, possibly leading to a more nuanced consideration of his overall interests. Ideally, this MIGHT lead to a "non-escalation" decision. Because there is more trouble around the bend for this guy.

Coincidentally, results of a telephone survey of over 9,300 people from seven European countries about their end-of-life priorities were presented March 24 by PRISMA at their symposium in Belgium.

Funded by the European Union, PRISMA is a research collaborative of palliative care experts from across Europe and Africa as well as palliative care leaders from EAPC, APCA and WHO. It is led by King’s Collage London as part of a "three-year action project" aimed at identifying priorities for palliative care research and practices.

The 9,344 survey participants were asked five questions regarding their priorities if faced with a life-limiting illness and a prognosis of one year.

Despite survey shortcomings, this kind of straightforward information can be powerful and provocative in discussions with our non-medical lawmakers, clergy, peers, and children.

As for Mr. Watson: I offer that his essence, his personhood, his history, his hopes, and his laughter have been stolen by dementia. But we don't know about his dignity. We have only the word of Mrs. Watson; she is his advance directive. If Mr. Watson’s ‘suffering’ can be eased, are not the issues of beneficence and non-malevolence null?

Are they arguing resource allocation? And is there a more difficult topic than that - - to debate who is 'more worthy'?

The only thing I know for sure is that everyone involved in his care has suffered.

Coincidentally, results of a telephone survey of over 9,300 people from seven European countries about their end-of-life priorities were presented March 24 by PRISMA at their symposium in Belgium.

Funded by the European Union, PRISMA is a research collaborative of palliative care experts from across Europe and Africa as well as palliative care leaders from EAPC, APCA and WHO. It is led by King’s College London as part of a ‘three-year action project’ aimed at identifying priorities for palliative care research and practices.

A total of 9,344 survey participants were asked five questions regarding their priorities if faced with a life-limiting illness and a prognosis of one year. No spoiler alert here. Pour yourself a cup of coffee and prepare to be intrigued. PRISMA Telephone Survey: EOL Priorities (go to bottom of page)

Despite survey shortcomings, this kind of straightforward information can be powerful and provocative in discussions with our non-medical lawmakers, clergy, peers, and children.

As for Mr. Watson, I offer this: his essence, his personhood, his history, his fatherhood, and his laughter have been stolen by dementia. We have only the word of Mrs. Watson; she is his advance directive. If Mr. Watson’s ‘suffering’ can be eased, the issues of beneficence and non-malevolence are null. Are they arguing resource allocation? Is that not a discussion we shun. . . who is ever more ‘worthy’?

Has Mr. Watson has 'suffered'? The only thing I know for sure is that everyone involved is his care has, indeed, done just that.

The patient doesn't lose dignity if the focus shifts from life-sustaining to comfort care. He probably retains more dignity. Treatment doesn't cease; it shifts. Why do physicians endure 4 years of medical school and 3 years of residency if they are going to ignore their medical judgment and provide futile care because the family wants it? I don't believe we should end this man's life, but I also don't believe we should inflict suffering on him by putting him through aggressive life-saving treatment.

What if "my wishes" are to have a lung transplant because I am a former smoker. It's absurd. Following a person's wishes that conflict with medical judgment is also absurd.

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